HSE chief not optimistic on reaching price deal for Orkambi

Minister says he will not be bullied, as talks with pharma firm on cystic fibrosis drug reopen

 Orkambi graffiti on Charlemont Place Dublin: under initial proposal the drug would cost €160,000 per patient annually.  Photograph Nick Bradshaw

Orkambi graffiti on Charlemont Place Dublin: under initial proposal the drug would cost €160,000 per patient annually. Photograph Nick Bradshaw

 

Senior health officials have said they are not optimistic about reaching agreement at talks on the price of the cystic fibrosis drug Orkambi.

Last-ditch negotiations between the Health Service Executive (HSE) and Vertex Pharmaceuticals, which manufactures the drug, have resumed following pressure by cystic fibrosis patients who say Orkambi is a potential life-saver for them.

Minister for Health Simon Harris welcomed the reopening of talks, but stressed he would not be “bullied or extorted” by a drug company seeking an excessive payment, nor would he allow the taxpayer to be extorted.

HSE director general Tony O’Brien said he did not have “a high level of optimism” about the outcome of the talks. Speaking at the launch of the 2017 HSE service plan, he said paying over the odds for Orkambi would only encourage others to charge excessively for their products and would be to the detriment of other services that needed funding.

‘Holding us to ransom’

Vertex said it looked forward to a “definite solution” at the talks that would allow access to Orkambi for all eligible patients. “It is now over year since this medicine was licensed and we are resolved that progress is now made without further delay,” a spokeswoman said.

“We are still looking to obtain specific feedback from the HSE on the multiple proposals we have put forward over the past year. The HSE needs to share our sense of urgency in these negotiations so that together we can provide access to Orkambi as soon as possible.”

The HSE directorate accepted the recommendation of its drugs group and formally rejected the last, “final” offer made by Vertex at a meeting last Monday, but this decision has been overtaken by events as both sides have agreed to further talks.

Orkambi, which improves lung function and reduces hospitalisation for cystic fibrosis patients, would cost €160,000 per patient annually, or €400 million for the health service over five years, according to the initial price proposal.

The HSE is willing to pay €75 million, which would make it the sixth-most-expensive drug used by the Irish health system.

Mr Harris said Scotland had indicated its willingness to collaborate with Ireland on drug prices and he has also had talks with the Dutch health minister on the issue.

Thousands of people protested outside the Dáil last week about the matter.